Grief in the twilight zone

Last Mother’s Day, I wrote about the twilight zone my mother was in as a result of dementia and how my siblings and I and our relationship with her were also in that twilight zone. By this Mother’s Day just past, our mother was dead and I find I’m still in a twilight zone of sorts.

When my father died unexpectedly several years ago, I was overwhelmed with grief, sometimes sobbing uncontrollably in those first days after his death.

With my mother, it has been different. This is due in part to the long slow lead-up to her death. At every care conference for the last 18 months, one of the professionals in attendance has told us that dementia is a progressive, fatal disease. There was no attempt to give us a timeline, but there was no sugarcoating either.

However, if you had asked any of us this past Christmas how Mom was, we would have said physically stronger than she had been in a year, able to read and somewhat comprehend books and the daily newspaper, and conversing rationally at times. We knew the dementia was still there, but the decline seemed to have reached a plateau of sorts.

When she got an infection in late winter, though, it was the beginning of the end. By April, the care center recommended hospice, which started a couple of weeks before her death. When the end came, it came swiftly, for which I am grateful.

And that’s the twilight zone. I did not want my mother to die, but I did not want her to live the way she was living, either. If she had continued as she was at Christmas, it might have been okay for a time, but when she was no longer eating and drinking and starting to have trouble recognizing family members, we saw how ugly dementia could get and how ugly it was for families whose loved ones have been in that stage for months and years.

My sister referred in a post on her blog to the devil of dementia and this state of mixed emotions is one of those devils. Even before the dementia, I am not sure my mother and I ever would have had any kind of resolution or reconciliation in our relationship, but dementia robbed us of that chance, as it robbed her of herself in many ways, and as it is robbing me now of the kind of heartfelt grief I had with my dad’s death. When I say to myself I wish my mother back, I know I am saying that I wish back the woman I knew as a child and a teenager and a young woman. I cannot wish her back only to have her suffer, as I know she did, the devil of dementia.

In the early morning hours after my mother’s death, jet-lagged and exhausted, I was in that half-awake / half-asleep stage when one doesn’t know if one is dreaming or thinking. The only word for what occurred is a vision, where I saw my mother breaking out of her body as it had been and standing there as she was many years ago. I like to think that is what has happened to her mind and heart and soul and that now she is whole and at peace.

In a twilight zone

On Facebook today, I saw messages from children of all ages to their mothers, wishing them a happy Mother’s Day. Several were accompanied by photos of mother and child with arms around each other and smiles on their faces. Other Facebook friends posted remembrances of their deceased mothers. I wished I could have posted something but I did not know what to say because the situation for me and my siblings is betwixt and between—our mother is alive, but she has dementia. She is in a twilight zone and in many ways, we, and our relationship with her, are also in that twilight zone.

I will not pretend that I have been close to my mother for the last fifteen to twenty years. She and my dad were wonderful parents when we are growing up and I know I was lucky  to have the wise, disciplined, and loving parenting they provided. But over the years, my mother changed emotionally and mentally and her refusal to acknowledge or seek treatment for those changes was draining. Although I spoke with, emailed, and visited her, I removed myself emotionally to avoid being sucked down with her. But however complicated my adult relationship with her has been, I would not wish what has happened to her on my worst enemy.

When my brother became her guardian a year ago, there was a faint hope that our mother would be able to move from her ‘independent with in-home care’ living situation, which had become untenable, to assisted living, but within a matter of weeks, it became clear she was not a candidate for that. Her physician and the geriatric social worker we consulted recommended a local Alzheimer’s care center. Even then, we hoped that after the initial evaluation period, she would be able to move to a unit that was more like assisted living than the unit she was admitted to, and is in now, but that was not to be.

We have learned, both from the staff and our own experience, that dementia is not reversible; that the most one can hope for is to halt it in its tracks or slow its progress. Thanks to her doctor, the line was held for a few months, but now, our mother is slipping away before our eyes. Given some of her other issues, I am not sure she and I ever would have had any kind of resolution or reconciliation in our relationship, but now there is no chance, nor will there ever be. All we can do is watch over her, make sure she is safe and well-cared for, and appreciate that for now, she usually knows who we are when we visit.

So today, my sisters and I visited her with cards and flowers and cupcakes and gave her pretty mint-green sheets for her bed. We sat around a table in the dining area, talking with her, sometimes talking around her because she zones out easily. Before we left, my brother-in-law took a photo of us three girls around her. Now I look at that photo and my heart breaks that the vibrant, intelligent, articulate woman I knew is no longer with us.